Can Patients Be Innovators When Managing Their Own Diseases?
by Patients with Rare Diseases and Chronic Needs" is the
title of the first working paper published as part of “TEIPL: Technology, Entrepreneurship and Innovation Policy Lab,” one
of the six Entrepreneurial Research Initiatives (ERI) recently awarded for funding by the CMU
Portugal Program. The
paper was written during the submission of the proposal and provides, according
to the authors, the first empirical exploration of disease-related
innovation by patients and their caregivers.
The paper was co-authored by Pedro Oliveira (Católica
Lisbon School of Business and Economics, CLSBE), Leid Zejnilovic (dual
degree Ph.D. student in Technology Change and Entrepreneurship at
Instituto Superior Técnico of the Universidade de Lisboa, CLSBE and
CMU), Helena Canhão (Faculdade de Medicina of the Universidade de
Lisboa), and Eric A. Von Hippel (Massachusetts Institute of Technology).
“Our aims were to measure the
frequency of innovation by these patients and their caregivers, and the
improvement in well-being they experienced from using what they had developed.
In addition, we explored the diffusion of their innovations to others, and
factors associated with both patient innovation development, and patient
innovation sharing,” the researchers explained.
In order to accomplish their goals,
the team interviewed, by telephone, a sample of 500 patients with rare diseases
and caregivers. One of the conclusions was that 52.6 per cent of the survey
respondents reported having developed and used an innovative solution to
improve the management of their diseases. Moreover, the authors concluded, “there
is a positive relationship between the impact of a solution on the respondents’
overall quality of life and the probability of sharing that solution, and an
inverted U relationship between age and solution sharing.” Their findings
suggest that “many patients could be greatly assisted by an improved diffusion
of the best known practices to and among patients and their caregivers,” the
The paper was written in the scope
of the Entrepreneurial Research
Entrepreneurship and Innovation Policy Lab - TEIPL,” a new multidisciplinary organization that brings together leading
academic and corporate partners to conduct research and policy analyses on the
development and diffusion of entrepreneurship and innovation to unlock
Portugal’s global competitiveness.
The Phase II of the Carnegie Mellon
Portugal Program emphasizes advanced education and research that can lead to
significant entrepreneurial impact. The activities of the program are for the
most part configured in Entrepreneurial Research Initiatives (ERIs).